His and Her Health

Hi.

I am a 30 year old woman and I have been having intense pain during sexual intercourse for the past year.

Over the years, I have taken a variety of oral birth control pills and none have worked. I have had a variety of side effects - break-thru bleeding, clotting, pain, and full periods every two weeks.

My doctor suggested that I use the Nuvaring. In the beginning I loved it. It was very easy, and I didn't notice any side effects. However, after about 4 months, I started to develop discomfort during intercourse. My boyfriend and I used to have prolonged sessions without any discomfort; however, the length of time we could be intimate was decreasing.

I stopped using the Nuvaring in January - and it's now September. My symptoms haven't decreased. I've been treated for chronic yeast infections, but my doctor doesn't seem to understand the intense pain I have.

It's gotten so bad that I can no longer be intimate with my boyfriend. It hurts when he touches me and the pain I feel during sex is like pouring lemon juice on an open cut.

I've been looking at these discussion groups and Vulvar Vestibulitis looks like it might be an answer.

Can someone offer some help?
Thanks

Here is a link to one of Dr. Andrew Goldstein's articles on vulvar vestibulitis. http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=18&Itemid=66es on vulvar vestibulitis.

Nuvaring can cause pain at the vestibule (vestibulitis/vestibulodynia) and it may not go away even if you stop it without proper treatment.

I wasn't on Nuva Ring, but my symptoms of vulvar vestibulitis began with the use of the pill. There are not a lot of docs around who know about about vestibulitis- I also got treated for yeast infections over and over for a little under a year. I am almost back to normal, but I can't pinpoint the reason. A lot of different treatments work for different people. Try to find a doc who is a good listener and is willing to learn with you. Dr. Goldstein's article Splitter, not a Lumper, would be a good resource.

My wife's issues stated after being on the Nuva Ring as well. Dr. Goldstein? What is the proper treatment? Can it be that surgery is the only option?

My wife is currently seeing a doctor in San Diego, CA. She is on a topical Testosterone gel as well as estrogen applied to the Vestibulitis. He beleives that this was fully caused by birthcontrol.

<small>[ 09-15-2008, 12:29 PM: Message edited by: Moderator ]</small>

I had the same experience with Nuvaring and Vulvar Vestibulitis. I was fine, pain gradually developed, then became unbearable. I had to go to 7 gynecologists before I was diagnosed with VV. I finally found one who knew what it was, and she prescribed a high estrogen birth control pill to treat it. That caused my pain levels to go off the charts. Because of that, I started to think my VV was birth control related. I found some research stating that VV can be caused by low androgen levels and found posts on this board and others describing treatment with testosterone gel from a compounding pharmacy.

I sent the research to my gynecologist, and she is attempting to find out what concentrations of testosterone and other hormones she should request for a gel from the compounding pharmacy. My marriage is suffering! It is so vital to make this information available to practitioners who may have heard of the condition (and there are precious few of those) but who don't yet know how to treat it. Marriages are failing for lack of dissemination of effective treatment information.

If anyone knows what concentrations and what type of gel to request from a compounding pharmacy, please post.

Incidentally, I had also tried treatment with topical Estrace cream, which was incredibly irritating to the area. I am wondering whether it was the estrogen in the cream or if it was some chemical in the cream base. If it's a chemical in the cream base, what types of creams or gels are non-irritating and not painful to use on VV patients?

<small>[ 10-14-2008, 04:54 PM: Message edited by: Moderator ]</small>

Jennifer:

Trust me I know the feeling of suffering marriage and going from doctor to doctor. I would recommend talking to Dr. Irwin Goldstein in San Diego about testosterone levels and compounds. Testosterone and Estrogen are his first two lines of treatment for VV.

My wife uses an Estrogen compounded in Emu Oil with less irritation. So that may be an option for you as well.

My feeling on this is that ALL hormone based birth control can lead to VV in some fashion, and that the Nuva Ring leads to it the fastest. I cannot tell you exactly how my wife if feeling on the Testosterone and Estrogen treatment. It still seems up and down.

Hope to read another reply. Good luck.

<small>[ 10-16-2008, 10:57 AM: Message edited by: Moderator ]</small>

Hi OrcaMar! Thanks for your post. I couldn't get in touch with Dr. Goldstein (and neither could my gynecologist), but I found a post somewhere from a woman who was seeing him and she said that a specially compounded ointment containing Estradiol 0.03% / Testosterone 0.1% worked for her. So I talked to my gynecologist, who agreed to write me a prescription for it. I used one ml twice a day for a month and a half, and now it's like I never had vestibulitis. I feel like a married woman for the first time since I started taking hormonal birth control. It's wonderful. I cannot recommend this treatment enough. I honestly feel like I am completely cured. My husband and I are trying to figure out what to do for birth control now, but that seems like such a minor problem considering what we've been through.

I get so mad when I read most of the published literature on this condition, because this treatment was so easy and painless, and nobody seems to know about it. Before this, I tried Elavil and physical therapy and dilators and regular Estrace cream and psychotherapy and just about everything else most articles say to try, and of course none of that worked. I drew the line at capsaicin, but I was considering surgery when finally I came across the information for this custom testosterone compound.

My gynecologist is great, but I am the one who suggested the treatment, and I am the one who did the research to find the dosage. It took me days, and my doctor couldn't find it at all, because it's apparently just not in the published literature yet. So you have to be proactive in handling this condition. If you have a doctor who won't listen to you, get another one.

Anyway, for anyone out there who thinks there might be a chance your vestibulitis is related to hormonal birth control, you have got to get your hands on some of this testosterone ointment. It worked miracles for me. And tell everyone you know if it works for you. Ask your doctor to publish a case study, if possible. This information needs to be disseminated in the worst way. I mean, for me, this was the cure. And it was easy and painless and only took a month. I have heard that sometimes it can take up to three months, but it was faster for me.

Hi there. I am new to this forum and finding myself extremely frustrated and unsure what to do next. I was diagnosed with pudendal neuralgia and vulvodynia 3 years ago and had pudendal decompression surgery two years ago. Before that I was diagnosed with IC and now recently I have been diagnosed with vestibulitis by a different doctor. He told me to spritz off with water after urinating and to apply premarin cream twice daily. Also, my allergist found out that I am slightly allergic to yeast so they actually put me on diflucan twice a week.
Now I am wondering if I should be off my OCs which I have been taking for 9 years. The problem is that pads hurt and you can forget a tampon. I also feel a ton of burning in the vestibule and vagina when I have a period or when I am going to have one soon or when I just finished one. I have long heavy periods that come quite frequently when I am not on the pill. I started my period at age 9 and have a family history of uterine fibroids (my mom and all my aunts...resulted in hysterectomy's). I had a hormone level blood test and the doctor said that my estrogen level was low but within a normal low for someone who is taking the pill. Every time I go on the pill or off the pill (those few days) I feel better.
I have a hard time distinguishing what pain is coming from what condition, but now am wondering if a lot of the pain I blamed on my pudendal nerve was actually the vulvar vestibulitis? How do I find a good doctor to treat vulvar Vestibulitis?
I feel like a big mess and am so tired every day I can't see straight. Please help someone...if you can.

Kate2009,you might try contacting one of the larger hospitals in your area.Ask for the Gynecologic Dept.Tell them what you are looking for. If they cannot help you might have to look up some GYNs in the phone book and ask if they specialize in vulvar pain or if they can recommend someone.

Thanks that is a good idea. It is hard to think straight sometimes.

Here is an interesting article, on one of our websites, that may be helpful.
http://www.ourgyn.com/content/index.php?option=com_content&task=view&id=81&Itemid=84

I found a nurse near my home that has been called an expert in vestibulitis by one obgyn...so I set up an appointment and am hoping it will go well. Thanks for the information and the support.

I'm glad I just found this article. I started using the Nuva Ring 2 months ago after not using it for a few years. I had no side effects to speak of a few years ago, and not even for the first month of the recent use. In the 2nd month, I started to notice alot of pain during sex and decided to tone it down a bit. The pain just kept getting worse and worse so I called a nurse and she said that the nuvaring could have made me "dry". So, I picked up some lube and I'm still having the same problems. After reading this article, I have discarded my nuvaring and I'm going to try a different kind. Hopefully my side effects will go away because it's causing problems in my relationship.

This post is a surprise for me. I've been using the Nuvaring for the last five years and love it. I'm terrible at taking pills and my periods were heavy and mood swings were the worst. When I switched to the Nuvaring, my periods became much lighter, it's easier for me to remember when to take out the ring and insert a new one every month, and my PMSing went way down.

The only time it affects my Primary Vestibulodynia is when I put it in and take it out, as it obviously hits that area.

With Primary V, I've had severe pain to the vestibule all my life. Change of birth control never made any difference, though this is only in my individual case.

So I'm wondering...is use of the Nuvaring more likely to affect women with Secondary (generalized) Vulvodynia vs. Primary??